Tuesday, September 30, 2008

I had lots of visitors today! Terry my special education teacher, Karen my occupational therapist and Pat the nurse for the infant development program all came together to play with me. While Karen & Terry kept me busy playing with fun toys they had brought, Mommy and Pat talked about what I have been up to since the last time Pat came to visit - January! There was obviously a lot for my Mommy to tell her - I have been a very busy girl this year! It has been a long summer without seeing Karen so it was fun to play with her again. I think she was pretty impressed with all my new tricks since the last time she came to visit. Terry brought me an pop up Elmo book because she knows I like Elmo so much. Karen is going to come back and see me soon so she can help me learn how to use my hand after the cast comes off next week.

After the excitment of all my visitors, I was a little worn out. To entertain me, Mommy decided to give me a change of scenery and let me play in her and Daddy's bedroom. Nine months ago Mommy would have been terrified to bring me into her bedroom without the suction machine close by but I am such a big girl now that I don't spit up anymore or need suctioning like I used to. Mommy doesn't actually have any toys in her room for me but I am just as happy playing with Henry and Chili's toys. They each have their own toy basket in my parents room. Chili likes hard vinyl squeaky toys and Henry likes soft plush squeaky toys. I like all kinds of squeaky toys so I pull them out one by one to hand to the dogs to play with. It keeps all three of us entertained!

In the Fall 2008 newsletter for The Foundation For Nager and Miller Syndromes, Mommy wrote an article about my jaw distraction. As soon as it is posted on line she will let you know. Today we received our copy in the mail. We weren't able to attend the yearly conference this year but they posted some pictures in the newsletter and it looked like a lot of fun. Mommy is hoping that the conference for 2009 might be a little closer so we could consider going.

My parents already know I am a pretty smart girl but I like to show off every now and then for them. My parents "trached" my Elmo doll a few weeks ago and today I noticed something just wasn't right. Elmo did not have on his HME. Now my parents fight with me all day to keep my HME on, so I know how important they are and Mommy wouldn't like it if she saw that Elmo wasn't wearing one. So, I scooted right over, pulled my HME off and attempted to put it on Elmo's trach when Mommy wasn't looking. With one hand it wasn't very easy but I gave it my best shot. I'm looking out for you E!

Later, Mommy was surprised to see me holding on to the handle of my backpack that my feeding pump is in. A few seconds later she found out why. Even though the tubing on my feeding bag is long, when I scoot around I eventually run out of tube. I just decided it was easier to grab onto the bag and bring it with me!

Sunday, September 28, 2008

Now that I have started signing, I am picking up new signs really quickly. Although I imitate lots of signs, I know and use "doggy", "Mommy", "Daddy" and "diaper" when my parents say the word to me.

My parents tried to wean me off of the Lortab last night and today. Maybe that is why I woke up twice last night for Lucille - once at 12:30 and once at 4. I was awake for about an hour the first time and the second time I went back to sleep after I got a dose of Tylenol. My parents tried just giving me Tylenol during the day but it didn't seem to work as well as the Lortab and I was more fussy than usual.

Mommy found some really cute two-piece big girl jammies at Kohl's today that are very soft. One has Elmo and the other has Minnie Mouse. They are long sleeved and warm so they will be great for sleeping in this winter. As soon as my cast is removed Mommy is going to have me try them on and get some pictures to post here.

Saturday, September 27, 2008

It was a pretty good day at home with my brothers and parents today. A lot of playing and a lto of practicing my standing and taking a few steps. Unfortunately, after I take one step I close my eyes and start laughing and usually fall forward and one of my parents catch me. As soon as I stop doing that I could probably take a few steps on my own but it's hard to walk with your eyes closed - you try it!

Friday, September 26, 2008

Just a few days post surgery and my swelling is back to "chubby" level vs. "square face" level! My parents are starting to recognize me again! Doesn't matter much to me - put a mirror in front of me and I am entertained. Mommy has decided that magnets are a gift from God because I can spend 30 minutes in front of the refrigerator knocking them off and putting them back on - just enough time for her to get dinner ready and she can still keep an eye on me.

I have been such a good girl these last few days and minus a little tossing and turning as I try to fall asleep (there is just no good position when you have a big ole cast and two sore and swollen cheeks) life has basically returned to normal. Hard to believe just a few days ago I was so miserable recovering from surgery.

While I was under anesthesia on Monday, my parents requested that all of the requests for blood draws be taken care of at once. My pediatrician wanted to see if I was anemic, UC Davis wanted to have testing done to rule out Fanconi anemia, Stanford genetics wanted to complete a chromosome breakage analysis and University of Washington wanted me to participate in a study on Nager Syndrome. I am a notorious hard stick so these requests have been months in the waiting. After I came out of surgery you should have seen all the band aids and needle marks - obviously I haven't improved in that area. One of the unfortunate parts of having all these requests (besides my obvious pain and suffering) is that everyone wants their blood drawn and put in specific tubes with specific amounts and mailed off a specific way. In the confusion, the blood drawn for the study at University Of Washington was put in a tube that did not prevent coagulation. My parents were given the blood to mail off by the surgery team and kept it cold until they got home. By the time they contacted the researchers about the blood, there wasn't a lot of hope that they would be able to use the samples. My parents decided to send it off anyway and today they heard back from the researcher that he was able to isolate DNA from the sample and would hopefully have enough for analysis. Yeah! With so few people in the world with Nager they only have a handful of samples so far so getting as many as possible is important to the study. Here's hoping they can identify the gene soon!

Thursday, September 25, 2008

If you have ever owned a doxie, you know they like to be warm. My brother, Henry, is no exception. Whenever he sees clothes warm from the dryer, he attempts to bury himself. This afternoon, he saw a pile sitting in a clothes basket and decided it was worth the jump!

After my surgery back in June and the excitement of an enema, Mommy has now gotten in the habit of giving me Miralax when more than a few days have passed without a diaper. Mommy warned Lucille this morning that I had been given a dose last night with my feeding so be prepared for fireworks. Mommy happened to walk out mid-morning just as Lucille was cleaning up the "fireworks". In the midst of playing on the floor this morning I needed to go - and go I did! Let's just say that Mommy and Lucille spent the afternoon cleaning rugs, clothes, backpacks - pretty much anything that was within 10 feet of me. Needless to say, I was feeling lots better after that!

As the swelling in my cheeks start to subside, the bruises are looking worse. Mommy is almost glad I don't have the appointment tomorrow at Shriner's - she can't imagine what people would think when they saw me coming with my big ole cast and huge bruises on my face!

I don't like to brag about myself very often but I am a pretty amazing little girl if I do say so myself! Just a few days post surgery and I am back on track. Last night I slept just like I usually do - from about 8 pm to 6 am. I woke up happy and ready to play. I saw Lucille coming up the driveway this morning through the office window and I was so excited to see her - legs and arm (and cast) moving all around! My parents stayed close today to keep an eye on me but not to worry - I was back to my regular nap and play schedule. You would never know I just had surgery two days ago! My parents also needed to meet with Sherry from my nursing agency to go over my paperwork now that I am back home.

I was looking forward to Friday when I was supposed to get my cast off but Mommy got a call from Shriner's today. I guess they really want me to have my cast on closer to 6 weeks than 4 weeks - so my appointment has been rescheduled to October 6th. Bummer! At this point the cast really doesn't slow me down much so another week and a half with it on shouldn't be too bad I guess.

Tuesday, September 23, 2008

My Mommy and I had a good night last night. I woke up at midnight and four in a good mood and ready to play for a little while before going back to sleep. Unfortunately, with all of the nurses and RT's coming in and out of the room every 15-30 minutes, Mommy didn't get much sleep at all. At 6:30 the resident for Dr Schendel came in and showed Mommy how to stretch my jaw which I really didn't like! Then, she let Mommy know I was free to go whenever I was ready. Since Daddy had to pack up and get to the hospital that left me some time to rest. I fell asleep after the resident left but when I woke up an hour later I was GRUMPY! I couldn't have any more pain meds until 10 so Mommy tried to keep me distracted while she watched the clock. Daddy showed up around 9 am so Mommy was able to run down and get my medications at the pharmacy. About 9:45 the nurse came in and gave me my pain meds and we were on our way!

Once the pain meds kicked in I napped off and on for about an hour. When I did wake up halfway home, I was my happy self once again. I smiled and laughed for Mommy as she played with me. Mommy had thought to bring a DVD player this trip and we watched some Baby Einstein videos which made the trip go by a little faster.

When we got home, my parents unloaded the car while I went down for a nap. While I was sleeping, Mommy went to pick up my brothers from boarding. In her sleep deprived state instead of calling Camp Bow Wow to let them know she was coming to pick them up a few days early, she called a complete stranger instead. The woman called Daddy back while Mommy was gone because she wanted to make sure that Henry and Chili got picked up - she was a little worried!

Throughout the day, I have been battling a fever. At 101.5 my parents are supposed to call the pediatric surgeon on call and I got pretty close - 101.2! Once I got my next dose of pain meds at 4 pm my mood began to improve as my fever started to go back down. I played all afternoon with my parents and my brothers, so glad to be home.

You can probably tell from the pictures above that I am VERY swollen and bruised. Both my parents think I am close to unrecognizable as their cute little Peyton. Instead, Daddy calls me Miss Peyton Square Head (like Sponge Bob Square Pants). I know he is just kidding and the swelling and bruising will eventually go away. Hopefully sooner rather than later!

Monday, September 22, 2008

Since I couldn't have anything after 5 am, the feeding pump woke us all up pretty early at 4:30 this morning. My parents got in the shower and I woke up on my own at 5:15. I was happy and ready to play but first I needed a bath. Then I got a 1/2 hour in of play time with my parents before it was time to leave for the hospital.

It didn't take long before they were checking me in. They had to get my vitals and my parents needed to talk to the anesthesiologist and the resident surgeon. They also had to write in purple marker the word "yes" on each side of my cheek where the distractors would be taken out. The plan was to remove the distractors that were put in place in June, loosen up the right TMJ and repair my cleft palate. The best laid plans....

I was given some medicine through my gtube to relax me and boy did I get relaxed! I was laughing and smiling at everyone in the preop room and waving at anyone who would look at me. A very far cry from the hour's worth of crying in the preop room at Shriner's when I didn't get any preop meds! I was really happy until the final pass off to the surgeons but even then it wasn't as dramatic as what my parents saw a few weeks ago. As I headed to surgery, my parents headed to the cafeteria for some breakfast and strong coffee.

The plan was that they shouldn't expect to hear anything for about four hours. The first 45 minutes would be spent getting me prepped and under anesthesia. The surgery itself would be about 2 hours. The remaining time would be spent in recovery. Just a 1/2 hour in, my Mommy got a call saying my parents needed to head back up to preop because the operating room had called out to them requesting to speak to my parents. Poor Mommy! I thought she was going to have a heart attack! My parents rushed back up to the second floor and then had to wait until someone from the operating room could come to the phone. It ended up they just had some questions about the blood that was being drawn and where it needed to go. There was a hugh sigh of relief from my parents and then they hunkered down in a quiet spot in the hospital to play the waiting game. A few hours later, Mommy was stopped by a volunteer who said the operating room had called out and said they were sending me to recovery. My parents were both very surprised - not enough time had passed. They waited a few minutes and then they were led back to the recovery area. There I was in all my after surgery glory! Mommy noticed right away that I didn't have a no-no on my left arm. She had a bad feeling that the cleft palate repair hadn't actually happened. Her suspicions were confirmed a few minutes later when Dr Schendel came into the recovery room to talk to my parents. The distractor removal had gone well and Dr Schendel was able to get my mouth to open quite a bit wider with the loosening of my left joint. When Mommy asked about the cleft palate repair Dr Schendel said that I don't have a cleft palate. That's right, I don't have a cleft palate. OK, so you are probably as confused as my parents were. Since I was born my parents have been told I have a cleft palate but no one could ever tell them what kind of cleft palate I had (complete, incomplete, hard palate, soft palate). Because my mouth opening was always so small, a good exam could never really be completed. When Dr Schendel went in to fix the cleft palate he discovered I don't actually have a cleft palate. My palate is closed all the way - no holes - but it is considered "short" and high arched. So that is good news and bad news. The surgery was less intensive then it was going to be - good news. I am probably going to need surgery several years in the future to make sure that when I talk I don't sound nasally - bad news. Even though my palate didn't have a cleft - because it was short and high arched it explains why I had a hard time sucking on a bottle. Dr Schendel said the muscles aren't really there so I didn't have the strength to suck like most babies do. At this point, my parents are just happy that I was saved from more pain and a few weeks with the no-no's. Instead of keeping things out of my mouth, Dr Schendel wants my parents to exercise my jaw to make sure I keep the extra opening that he was able to get by loosening the joint.

With that news, my parents were prepared for a pretty easy recovery but I didn't let them off so easy. For the first few hours in the recovery area I was not happy! I was crying and fighting almost the whole time - despite several doses of pain meds. When we got up to my private room I had settled a little but was still not quite myself. I napped a little and when I woke up I was just as grumpy as I had been earlier. Daddy asked for some pain meds and I got a dose of Lortab through my g tube. It was like magic. Within 1/2 hour of the pain meds I fell into a peaceful sleep for close to 3 hours and when I woke up I was a brand new girl. I smiled and laughed at my Daddy as he got ready to leave for the night. Then Mommy and I played for a few hours together before I turned over and went to sleep. If all goes well tonight, Dr Schendel said I could go home tomorrow afternoon. Yeah!

Time to head to Palo Alto! I got some good play time with my brothers this morning before they got shipped off to camp. I don't think they were expecting it because Mommy got all their things together yesterday when they were sleeping. When Daddy got home from dropping them off, then he got his clothes packed up and we were ready to hit the road. It was a uneventful drive to Palo Alto. I only took about a 20 minute nap so I was really tired by the time we arrived. Although the accomodations were not 4 star, they will do just fine. Daddy went to get us dinner and then it was about time for me to hit the sack. Rather then do my bath tonight, my parents put me to sleep a little early. I slept about 30 minutes in my bassinet but it became pretty clear that the bassinet was just too small for me now. I couldn't turn over onto my belly and I was getting pretty upset. Mommy had Daddy put a thick blanket down on the floor and boxed me in with furniture and suitcases so I couldn't roll across the room. I thought the freedom was great and rolled around the floor playing for close to an hour before finally wearing myself out. Although it was a little unusual sleeping on the floor I slept through the night without a peep! Mommy got up a few times to change my feeding and empty the mist drainage bag but I was a really good girl - sleeping right through it all!

Saturday, September 20, 2008

This morning Mommy and I started out with a nice walk to the local park. The area around our house used to be the Machado Dairy and to recognize that - they have placed a large concrete cow in the children's play are of the park. Since my parents are working on the cow sign with me - Mommy decided to let me get up close and personal. I didn't think too much of the cow but I did make sure to wave goodbye when it was time to leave. I also got on the baby swing for a few minutes but started to get scared. Mommy put me on her lap on the big girl swing and that was a lot better.

In the afternoon, Daddy dropped Mommy and me off for a play date with Sophia and Brighton. While Mommy and Kelly talked, I got to take advantage of all the fun toys Brighton has. Brighton was very nice to share them with me. Sophia was a very good girl and didn't hardly make a peep the whole time. I started to get just a little fussy after a few hours so it was time to leave and go home for my mid-day nap. We will plan another play date for after my surgery.

My parents decided to change my trach tonight rather then wait and change it tomorrow night at the hotel. Afterwards, Mommy gave me my old trach to examine since I was so interested in it. She thought for sure it would go straight to my mouth - just like everything else - but she was surprised when I put it to my neck where it had just come from. Daddy wasn't surprised at all - he knows I am a pretty smart cookie. Just because I don't talk yet doesn't mean I'm not taking it all in : )

We have a time! Lucile Packard called today and told my Mommy that I am scheduled for surgery bright and early Monday morning. My parents have to be there with me at 7 am for check in and I will go into surgery around 8:30. My brothers are going off to Camp Bow Wow on Sunday morning and then we will leave for Palo Alto on Sunday afternoon.

In the evening, the whole family went on a walk together. I can really tell that summer is over because it got chilly and Mommy had to give up her jacket to me to keep me warm!

Thursday, September 18, 2008

I got a nice surprise in the mail today from my Aunt Kristin. She knows how much my parents joke with each other about their differing political views. My parents are both actually somewhere in the middle politically - but since there aren't any middle of the road candidates - Mommy ends up leaning to the left and Daddy ends up leaning to the right. This leads to lots of heated discussions on who has the better candidate (I don't think my parents really like either at this point). To help ease the tension a little (and to irritate Daddy of course) she got me my own t-shirt so I can express my political beliefs - that's right - I am a little Democrat! Daddy is already plotting a way to get Aunt Kristin back using Jackson as a pawn - we'll let you all know when he gets around to doing it!

I am a very busy girl. You can see in the photos above my newest trick. Throwing my toys on the floor over the side of my walker is so old school. I have moved on to cramming them down the leg holes in my walker - much more challenging! Before Mommy knows it all of my toys that will fit have made it to the floor and I am ready to start over.

Mommy called Ronald McDonald House today and found out that they don't have any available rooms for next week. The staff helped my parents find a close hotel that they can stay at instead. Mommy is disappointed that they weren't able to stay this time either.

Karen, my feeding therapist came by for a visit this afternoon. Based on some experiences I have had with eating over the last month we're going to take things slowly for now until I can get in for my swallow study.

My parents were very impressed this evening to see how quickly I am learning to balance standing up. I spent about an hour standing up from sitting on Mommy's leg (no hands guys - just standing up without anything to hold on to). Afer a few seconds of balancing I would then reach for the side of my exersaucer to grab a toy. My parents continued to move the exersaucer just a tiny bit farther away until I got to the point that I had to take a small step to get up close the exersaucer while holding on to the side. It's definately progress from just a few days ago. After all the exercise I went down very easily tonight.

Tuesday, September 16, 2008

It's been a busy few days for my parents at work but life has been pretty quiet for me. Monday, the Miralax that Mommy had given me finally kicked in - big time!!! After a few category 5 messy diapers I had the worst case of diaper rash Mommy has ever seen. I would cry ever time she would lay me down to change my diaper. To ease the diaper changes during the night with Marianne, Mommy gave me some Tylenol to help ease the sting and I slept great.

This morning the rash was looking a lot better so my spirits had improved from the night before. Good thing because I had visitors today. Terry and Kirsten came by for the first visit since I had my hand surgery. I showed them that despite my big ole cast I am doing just fine. I showed them how I could sign "doggy" and clap and how I am able to pull up and practice standing. I think they must have been very impressed because they clapped for me a lot today! Mommy had a few signs that she wanted to learn - fruit, toy, dance, go, funny and cookie. a few other signs that might come in handy now are hit, soft and nice. As in "Peyton - no hit!", "Peyton be soft" or "Peyton be nice"! I am really a very good girl most of the time but every now and again I like to test my strength - and I am pretty strong - just ask my parents after I have smacked them in the face a few times!

There are a few more outstanding items before we leave for Stanford on Sunday morning. Mommy is supposed to hear from Ronald McDonald House tomorrow if there will be room for us to stay there this time. Mommy should also get a call on Friday letting us know what time my surgery is scheduled for on Monday. Another day another surgery - that's my motto!

Sunday, September 14, 2008

My Papa Smith wondered how big my new piggy bank really was, so Mommy promised him she would take a picture of me sitting next to it - don't we make a cute pair! I also really like my puppet - we give each other big kisses!

Next week this time we will be leaving for Stanford so Daddy packed up my medical bag to get ready. With all the hurricanes lately it reminded my parents that they should leave my medical bag packed at all times - just in case.